From Regional Patient Advocate Fernanda De Oliveira Martins
I am working with many countries in my region to support them in implementing some of HAEi’s wonderful tools and services. Chile has recently launched a “web2go” website. This solution is a quick process, free, and helps Member Organizations be more visible, increasing HAE awareness. You can see their website here: https://aehchile.haei.org/
We expect that more patients, caregivers, and physicians can now find the Chilean HAE Member Organization more easily.
HAEi has run the Baseline Burden of Illness survey in Mexico. I have provided support throughout the process, including joining the presentation of the results to support with translations. The results are really helpful to have a better understanding of the impact of HAE in Mexican patients and an overview of the treatments in use in the country. The results can now be used to increase awareness of the disease and to show the importance of getting treatment. HAE Mexico plans to share the results at the Latin American Society for Immunodeficiencies (LASID) conference for healthcare professionals.
The HAE community in the region is very excited about the upcoming 2024 HAEi Regional Conference Americas in Panama next year. Over the past weeks, I have supported the Member Organization leaders with questions regarding the information for the travel grant process. Some Member Organizations, such as Bolivia, are new and have never participated in a regional or global HAE event. I’m delighted to be able to help and look forward to seeing representatives from Bolivia and all the countries in my region in Panama. We hope for a great meeting!
I continue to share important information via our region’s Instagram: https://www.instagram.com/haei_sudamerica_y_mexico/
It increases awareness of the disease and helps in disseminating the activities from the countries in the region. Follow us and stay up-to-date with the activities in our region.
